Thanks for taking the time to read and understanding my pledge to myself and Tia x

shes was only a child when she passed.......heartbreaking

 I will be running every day for a whole year to raise awareness of Battens disease, I want people to know about this devastating life-ending illness.

Tia was my cousin. She was only 13 when she passed away, it was extremely sad and so unbelievable, that it happened to my family ..heartbreaking, her life had gone, she had no choice it was all stolen away to this day, there is still no cure.  

She was such a beautiful & happy girl, but to leave this world, she left so many broken hearts.

Together, we can help the families going through this extremely sad time. Chestnut treehouse children hospice has an amazing team, offering full support, advice & end of life care, the hospices staff went above & beyond to help our family. 

I will be personally running in marathons, races, mountains & along beaches, in many European countries, there are no limits! 

I hope to raise awareness by doing this, so more people can help and understand what these families had to deal with. 

Please share and donate if possible to help fund Chestnut treehouse. By raising awareness you can actually understand and learn about this terrible life-ending condition. 

I want to get this out there!  

let's try to find a cure and help stop the heartbreak, Children are dying my niece had no chance....   

Twitter Facebook Instagram 

Sams record and daily account
Sams Ocr account

https://www.instagram.com/samson_ocr/

http://www.bdfa-uk.org.uk/about-batten-disease/

https://www.facebook.com/ChestnutTreeHouse/

https://twitter.com/ChestnutSussex

Btten Disease is a fatal, inherited disorder of the nervous system that begins in childhood. ... Eventually, children become blind, bedridden, and unable to communicate.  Batten Disease is always fatal